Living One Hour a Day

Someone who has been living with chronic pain for years told me that I was lucky to have “at least” an hour of grace everyday.

I said a weak thank you not quite sure what to respond.

For me there is no hierarchy of pain. My pain is not worst or better or less than yours. There is no competition or trophy.

We all live our pains the way we live them and it’s different for each of us.

Someone with the same issue will react and manage it completely differently.

Am I really to the point that I have to consider myself lucky that in the midst of it all, I get one hour a day where I don’t feel like I’m gonna pass out, out of exhaustion?

Is it my life now?

Hey babe? You’ve got stage 4 cancer, at best 5-8 years to live (10 if you’re lucky (!!!)) but be grateful you have an hour each day to feel (almost) like your best self!

FUCK OFF!

I told the doctor that I would prefer to live 3 years fully myself than 25 completely numb.

I chose to take the medication. I said yes because I am fucking afraid of pain, and of the accumulation of water in my lungs, and the dry cough that never goes away.

But taking Pablo and Lolaz means that for the rest of my life, I will have an hour a day where I can feel that I am not dead yet.

Okay, maybe not for the rest of my life. It seems that the body can “adjust” and in a few months, I’ll have 3-5 hours a day of Happy hours.

Yeah!

Of course, I will manage. Of course, I will make it work. Of course, I will find a way to function during the day despite the numbness and the lingering hangover feeling.

You know when you wake up the next day of a decadent party with lots of booze and food, and you had the one last drink that makes everything go awol? And you knew not to drink it but you did it anyway?

I wake up every day with the feeling that I had one too many.

And the feeling lingers all day (even during happy hour).

I am grateful to be alive. Period.

There is no luck involved and I would never compare my situation to some else. It’s meaningless.

Imagine if I was going around: Oh lucky you, you just got the flu.

When you have the flu you feel like shit. And I believe that you are allowed to complain as much as you want. You don’t have to shut up just because I am next to you, flaunting my cancer like a trophy. (Okay I don’t do that ahah!)

I don’t know anyone with a serious illness making wrong anyone with a little scratch.

When you are in pain you are in pain. It is your journey.

This is my journey.

But the real question in all this, is not if you are lucky to be healthy or only have an hour with less pain…. No the real question is:

WHAT DO YOU DO WITH YOUR LIFE WITH ONE HOUR A DAY.

It is very easy for me to not give a dam about it. To simply notice that I have a little respite from the hangover, the nausea, and the numbness, and do nothing. Because even during happy hour, I feel tired AF.

I relish every second of it.

I cook for myself and feel my capacity to stay standing more than 3 minutes. I smell the food. I smile. I make some jokes and entertain conversation with my aunt (we live together).

I live life with the capacity that I have.

Once a month, I have a whole day where I feel mostly myself (like 85%) During happy hour I am at 70%. The rest of the day I am at 35-50% depending on where I am in the treatment cycle.

During that day, I smile and I soak up everything my senses can take in. I go for a longer walk. I cook more elaborate food (green soup is very easy to make on low days).

But don’t be mistaken. I may feel half the energy most of the times, I am still fully myself.

I’ve got shit to do and I will make things happen.

Even if I only have one hour a day.

With great respect and love!

A.